To those on the site that asked if I'd keep them updated about my husband's journey trying to be accepted for the Australian trial using 2 drugs (put simply in my words) that are regularly used for other things but now being tried together for prostrate cancer - I'm sad to say that we saw the specialist conducting the trial and he essentially said that my husband's cancer is too aggressive and too widespread to take the risk.
We're disappointed but not totally surprised as his PSA is doubling in 4 months. The doctor discussed some options. There is a treatment using a drug attached to the substance in the PSMA which targets just prostrate cancer cells. This costs $A10 000 but it's too early for this to be used. He also mentioned a stronger type of hormone which costs $A1 800 month which we could think about. Anyway a new bone scan on Thursday and appointment with Prostrate specialist and I guess we're off to an oncologist closer to home than the one that is undertaking the trial.
Thank you to all on the site who sent their good wishes etc. I'll keep you posted but I guess our story will be much like so many of those on this site...
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marykg46
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It is unclear to me how widespread his cancer is and where it is located...you can put that into your profile which is then available for all to see...The information should be what is his gleason score, when was he diagnosed, does he still have his prostate?, where is the metastasis located?...You can reply and put it here, but inevitably, these questions will be raised again....these things enable us to help you.... we're here to help ....
I get a bit confused with the website for example I can't seem to respond directly to just the person (you) writing without it being posted as the 'message' tab is greyed out. One thing I wanted to ask you directly as you seem to be across just about everything is that our daughter wants us to go to Europe in September for a month. We have tickets on hold. Seeing Ron will certainly be put on hormones I'm wondering if he'll cope with the 24 hour trip. Once we're there we bunker down so that isn't such a problem. You asked about his background that I would put up in the 'profile' section if I could sort of locate the right place. I thought too you might be able to guess what will be the first line of defence the oncologist will maybe use.
Diagnosed in August 2015. Prior to removal he had a scan which gave a PI-RADS score of 5 on a scale of 1-5. It picked up the extent and size of the tumour and also I think the aggressiveness. 18 out of 20 biopsies were positive either G8 or 9. He had robotic surgery in November with 85% at G4/5, stage pT3b with bilateral seminal vesicles involved, extension of 5mm of most of gland with extensive positive margin of G4 at apex and right side. After coming home he developed infective pubic symphysitis and was hospitalised for 15 weeks. In May 2016 he started 33 sessions of radiation. Following this he had a year and some of multiple admissions to emergency with retention from blood clots. Various times released with catheter and general bleeding most of the time. By mid 2017 situation was considered very serious with huge blood loss and his heart specialist suggested he be considered for installation of Watchman device to enable him to go off blood thinners. In no time after this operation and leaving off Eliquis he had no loss of blood virtually at all and has remained same. His PSA had started to gradually creep up and once it reached 2.1 earlier this year he had the 18PSMA which revealed multiple avid nodes in various areas - retroperitoneal, mediastinal and hilarious lymph nodes and multiple avid bone metastases in a number of ribs, vertebral body. His latest PSA is 4.7 (doubling in 4 months).
That's about where we are now....prostrate specialist tomorrow who has avoided using hormones. Oncologist we saw on Monday said hormones are a problem for him as because he's overweight 111kg (but quite tall) they are likely to trigger diabetes and coronary disease (thought apart from AF his heart is very good). He took a copy of the latest PSMA to see what other colleagues thought about Ron having the PSMA + drug ($10K) but he thought might be too soon. This specialist was quite serious and gave the impression that things aren't great and I know for the very first time the 'penny' dropped for Ron that he's really now just buying time and his PSA isn't going to just drop by itself. Intellectually he says he knew this but I don't think he had really taken it on board.
You might be able to guess what hormones they'll put him on and I know everyone is different but whether the most likely side effects will be a problem on a long flight is what I'm wondering about and if he'll cope if he feels sick etc. Thought with your knowledge you might have some insight.... even if it's not too accurate. If we don't book the tickets this weekend we won't be able to travel on same plane with our daughter and her family which he would truly love to do. We're able (at a price) to get insurance for him and me too if we needs to cancel...so it's not about the money more whether travelling will be pleasant and enjoyable. He has a very calm nature and wouldn't want to impact on any one else.
So, I went back and reviewed your information again--reviewed some info on Watchman and wanted to give you a solid answer and some choices--while his PSA is still low, he needs to be on hormones--forget about diabetes--diabetes is treatable...and he should cut back on sweets anyway--cancer loves sugar...--
For him, I would chose Degarelix--trade name Firmagon--less cardiac risk--some info:
The downside of Firmagon injections according to folks here is soreness at injection site--people advise using ice at the site and things like ibuprofen or naproxen
and I would add Casodex/Bicalutamide to help block the cancer cells from using the testosterone available. The side effects from ADT is presented by MSK here:
Hot flashes are what people complain about most and you could ask the MO about estradiol patches or megesterol acetate for the hot flashes...Venlafaxine is also used for hot flashes--it is an antidepressant ---and can be quite energizing in older adults...
According to your posts, other than Afib, his heart is OK and I guess that includes his EF (ejection fraction) is OK... Despite that, I would not choose abiraterone due to higher incident of cardiac related events, and if his EF is not within normal limits, he could end up with CHF ( congestive heart failure)...
I would consider having them put him on Erleada /apalutamide or Xtandi/enzalutamide as well. I was on apalutamide in a clinical trial and tolerated it well...People on Xtandi complain of fatigue, often severe. While apalutamide is not yet approved for metastatic hormone sensitive prostate cancer in Australia, there is proof it works from TITAN trial:
You could also consider Tall Allen's advice about LU-177 and AC-225, but I might hold those in reserve for later, especially if his PSMA is not really high...
Lastly, he is going to be on a long airplane ride, and should get up every few hours and walk around for 10 minutes or so to keep blood from pooling and reduce risk of DVT (blood clots in his legs, etc..). Ask them if he could take his eliquis just for the flight or be on enteric coated aspirin 325 mg one tab twice during flight...
Best of luck with the Oncologist tomorrow...and safe travels on the plane ride...Get there and have some fun... Life is Good....
I'd have to say you're amazing I can't imagine how you've been able to collect all that information and then process it so it matches different situations. Hope you realise what a great resource you are and how you help others working through rather complex information and details. I now just have to work through the details of what you've sent me about hormones. Must say I've found all these different names hard to get my mind around. What I'll do is go through what you've sent bit by bit and then try to crystallise it into something so I ask all the right questions when we see the oncologist. I think your suggestion of Eliquis a good one and I'll raise it when we see his heart specialist in early May.
As for ED ....that's been an issue long, long before any thoughts of pc, perhaps from very early in our long marriage coupled with avoidance to acknowledge a problem. Investigations found that high blood pressure probably from Conns Syndrome (which was diagnosed later) had done much widespread irreversible damage. Viagra helped but once pc was diagnosed it's been a non issue not to be discussed!
Thanks again for the information ....you're an invaluable resource....
You are most welcome....I wrote down his info...checked some things and wrote it... I am still learning about this disease...it seems like a lot to digest...the take home messages are:
1) He has to be on ADT--hormone therapy-- do not take no for an answer on this matter-- has he had a T level? My MO gets one with the PSA. each time. Nonsense about diabetes risk is just that--nonsense. Prostate cancer is a much deadlier risk--firmagon and casodex ...
2) Hot flashes are common so have them give him an Rx for megesterol acetate tabs 20 mg--can cut in 1/2 to start and cheap, or estradiol patches, or the antidepressant Venlafaxine. If he is one of the lucky few who finds them an inconvenience rather than intolerable--then no need for anything but get an Rx just in case.
3) See what they say about Xtandi or Erleada? He has multiple mets--he needs a big gun in my opinion...
4) Do not forget that you are his advocate and if they do not agree to hormones because of diabetes risk, then consider firing them and get another Oncologist.
5) Definitely talk to the Cardiologist about Eliquis for the plane ride vs. ECASA 325 mg twice during ride...
Lastly, as for ED, one of the things that helps ED is losing weight and exercise....:
Lastly, I appreciate your kind words....this forum is blessed by many intelligent and thoughtful posters... many follow the science...some bring knowledge of diet and supplements...all add in here to make us a unit... Thank you for considering me an invaluable resource...
You most definitely are invaluable. You seem to have been able to rise above whatever challenges you are facing and just keep on sharing considered and informed information. I will always be grateful.
This last lot of information is very helpful ...sort of condensed so I can get my head around it, make some notes to take with me when we eventually get to an oncologist. I don't think we'll see an oncologist until mid May because we have Easter coming up and often it takes a while to get an appointment. I checked at the office of the oncologist I'd like him to go to and they have an appointment mid May but they won't hold it until I have a referral. This arvo we see the prostrate specialist who will I'm sure give him a referral. I've checked out the ones at the hospital we go to and there's an Assoc Prof there that I'm going to suggest.
Today we'll also get the results of the new bone scan that was done on Wednesday. The oncologist we saw on Monday (you know, the one about the trial) insisted that a new bone scan was needed. He had the last one in mid January. The ED is just simply a no go zone. He would be absolutely mortified if I raised it. A very long history of serious denial unfortunately.
This week has been one very hard week as I'm sure for the very first time he has realised that we're now buying time there's no magic cure. Some sad moments and a few tears. In one way he's very fortunate in having a very placid nature so whatever comes along, including the inconvenience of effects of hormones he'll cope with and will try not to impact on myself or the wider family. This makes him very easy to look after. I'll keep you posted on what transpires today. Hope you have a nice day when the sun comes up....not sure what time it is there but probably night time.
Sorry that he is feeling depressed....This is an incredibly hard time for both of you....Please be sure to take care of yourself as well... You will get through this time...
The venlafaxine for the hot flashes may not be bad for him and pick up his spirits a bit...
Just print off my reply above and take it with you....the firmagon and casodex are a must, and if you can get the Erleada then that's a hat trick (3 goals in hockey)...
Get through the visit and feel free to message me, and I will help out in whatever way I can...
God bless you both... you are not defeated, and there are many here who have overcome some serious starts with this disease... Feel free to post issues here and the group will help... we're like a family here...We don't always agree but we circle the wagons when someone is in trouble... Good luck with the Prostate MD...
Thank you for your offers. Not only informative but kind!!! Yep it's really hard. Sort of feel like I'm in Limbo if there's such a place. He's sad because he's going to miss out on seeing the last grandchild who shares a wonderful, special relationship with him grow up.....
Yes I'll print it off and yes it is hard in lots and lots of ways. It would be a lot harder if we didn't have enough money to choose doctors etc. Public health in Australia is fabulous but we've never relied on it. Always been able to choose.
I noticed on one of your posts about hyperbaric. When Ron was bleeding and clotting all the time his p specialist recommended hyperbaric. He also thought it might help generally improve his spirits . We started (at that stage along with the catheter that was mostly filled with blood and clots..pictures on my iPhone are horrific) and by day 3 he was in emergency with retention and that was the end of hyperbaric for that year 2017. Early last year (2018) post Watchman no blood now and no retention, specialist wanted hyperbaric again and Ron managed 5 and a bit weeks of daily hyper but then was back in emergency with retention at end of last week...no clots but calcium build up. Another cystoscopy and since then no retention! He liked hyperbaric though. Liked to listen and talk to some of the other people there. Not sure it did any good. Certainly didn't halt his pc progression did it!!
Thank you for your kind words....it's nice to know you don't mind being bothered by all this communication. Not many people...probably no one in fact I could share these details with.... definitely a blessing having you at the end of the internet. A selfish request --- Stay well and healthy won't you!!
As they say down your way, "No worries, mate..." He needs to give up this idea that he won't be around to see his grandchild grow up, and get ready to fight... There are posts about diet changes including broccoli sprouts which cujoe wrote about which supplies large amounts of sulforophane which inhibits prostate cancer:
If growing broccoli sprouts is too much hassle, then consider Broccomax by Jarrow..can by it on Amazon....
Cancer feeds on sugar and carbs ... I follow a no sugar, lower carb, no red meat diet and that may be a helpful change for him. If he smokes, then stop. ..
If you can choose doctors, then consider going to MD Anderson which is one of the top prostate cancer centers and their Moonshot Program:
Stay in touch and leave the lights on ...never know when Austalia might become part of the FFT--Fabulous Fish Tour-- 2 fishing trips--a trip to the desert and more with fellow warriors planned for this year.... Life is good....believe in a miracle....
Well no oncologist... the prostrate surgeon said he manages the hormones until you need chemo. So what's in store ... bone density test, Cosudex-Bicalutamide 50mg for 28 days, Lucrin injection in two weeks and then every 3 months, vitamin D and calcium supplements, review in 3 months with PSA & testosterone test and Lucrin Man Plan . So much for thinking you might be able to have some input! I did ask if maybe he might need patches to manage the hot flushes and specialist said he doesn't like to subscribe oestrogen. Not sure what you'll think about this approach but that's what's going to happen. Sort of felt a bit irrelevant once specialist started outlining way forward. Hopefully, it's the right strategy or else that miracle might be needed. Enjoy your weekend.
At least they are getting him started on something--casodex initially and then Lupron.. bone density test is a good idea---just had mine...adding vit D and calcium...also good... will review the Lucrin Man Plan later (not familiar to me)..Hopefully, he has a strong drop in PSA from the new meds. MD's that act like the patient has no voice in the matter should not be in practice in my opinion--how annoying that is--as if patient's don't know anything... Keep us posted...if you want a second opinion consider MD Anderson, Memorial Sloan Kettering or Mayo Clinic--there are some good people there... keep you in my prayers...
We'll see how things go...just another step in the journey. Think a bit of a cloud has lifted as there's some sort of treatment that probably could have been started quite a while ago...
Indeed...should have been started quite a while ago, but let's hope that the ADT drops his PSA big time and shrinks those tumors up...he got started...good news...relax and breathe a bit...go do something fun...
Very good fishing in Australia. You need to put it on your bucket list. Not sure about the desert...plenty of that too here but I'm not one for the desert. Think I'd stick with the desert you've planned on your trip.
Tickets booked for Paris. Doctor says travel while you can with one of those looks people give you when they really mean it won't be long. Hubby had trouble today coping with going to a footie game to see a grandson play. God above only knows how he'll manage Paris for a month! So impressed with your positive attitude. I'm sure it stands you in good stead and provides a great role model to inspire others. Keep well to enjoy those trips.
The desert is to see my fabulous friend, LuLu in Arizona...a true warrior who has battled PCa for 4 years...
Your doctor giving you a look like that is shameful...especially since he should have put him on ADT months ago...his latest PSA is 4.7 and with the ADT--wait a month...I think he will be much lower...Ignore the doctor and his looks...From my own experience and many on this forum, there are people on this board more knowledgeable than the average Urologist here.... This battle is yours...Nalakrats has fired 4 doctors or more, has his own path and is quite successful... many others as well...
Most everyone here has cut out dairy products, and eat a healthy diet...The Broccomax is a good addition for sulforophane, and I take curcumin several times a day, zinc citrate 50 mg a day,and Vitamin D...There has been studies showing a benefit from being on a statin drug...You may wish to explore that with Dr. Clueless...
I think next month the picture will look brighter for you... praying it is so...
Fishing in Oz...next year maybe... Going to Israel with the wife next month...safe travels to Paris... Do something fun !!!
Mmmm yes looking forward to Paris. We haven't been to Israel but it should be wonderful. You both will have a wonderful time. Is it a problem getting insurance for travel? We've needed to pay $5K to cover Ron for AF and PC. Even mine was $1K so I could cancel for any reason. Another cost but will give us peace of mind. This week I'm going to sift through your health info and make up a plan. The Man Plan comes with an exercise physiologist so that will be a start too. A new week this week, he'll start those tablet ready for the injection and the diabetes tablets, heart specialist next week and maybe cholesterol tablets. I've checked out lots of those who add to this site that have Lupron injections and it seems like you say..diet, exercise and positive outlook seem to be the key to successful management. A good week ahead for you and yours and us too.
Thank you teamkv...that's very sweet. It's not easy is it? I think I'm fortunate that I still do some work and so I can lose myself in that from time to time and I'm certainly blessed to have found this website. I had thought I'd done some excellent research for myself working out bits as things came up over these last three or so years but I had no idea that there were so many people out there with such excellent insight and knowledge and so supportive that I could tap into. You take care too.
You and he both are blessed with his calm nature.. deep breath . You will get him what he needs ..there is no giving up with APC ... no cure once advanced ... we are all just buying time... but time and life are precious ... Your specialist should guide you correctly. Hormone therapy can work well for an untold amount of time. I think wife’s coming on HU to help their husbands is a true form of love. Your love is good medicine... Easter? I went into k failure waiting for my urologist to come back from spring break with his kids.. amazing how busy the drs are....Cancer is an epidemic in my opinion. Peace to you both... Scott🌵
Yes I am fortunate Scott, I can't imagine how hard it must be for women if your partner is volatile or you're in an unhappy relationship as this condition really shakes men to the core. I can't think of a worse condition. My husband likes hearing about the different bits of advice I pick up from this site I think because it comes from real people. Yep these specialists are certainly busy but ours saw us quick smart last week when PSA doubled in 4 months. Peace to you too but it sounds to me like you have already found it. Take care and enjoy the week ahead.
Marylkg46.in truth , He has you , and you will assure that he’s here as long as possible . The theme is that while we are here , we do give and accept love.. You already have that ..God bless you both in the storm . Soon you’ll know what to do . Enjoy time together..
You have received quite a response . Very good advice indeed. You know that you’re not alone on this journey . This can be a positive place to gain knowledge ,and moral support .. it will get better...
A few last questions regarding his Conn's syndrome....... Was it determined to be a benign or malignant tumor, familial, or idiopathic--cause unknown?? Did he have surgery for the Conn's Syndrome, and if so, what is the state of his adrenal glands? The adrenals play a smaller role in testosterone production, with the testes providing the majority of testosterone. That is why I am curious about that and his T level...
His Conns was diagnosed and removed maybe thirty years ago and the tumour was benign. His T levels were checked late last year with some other routine testing and were very good. The PSMA noted the removal and that there was no activity in the remaining gland.
Perhaps slightly...about 85% of T comes from the testes, the other 15% from the adrenals, so missing one adrenal.. may be a little short on T...
I think you already have a start on your plan--got on ADT, getting with the Cardiologist, he is already on diabetes pills--metformin I hope, which is in phase 2 study here for benefit in PCa, and if he gets on a statin--atorvastatin or rosuvastatin are recommended, then you're part way there...Oh, and the exercise physiologist ...
You see....the cup is almost looking half full.....
Take an evening for yourself and go out with the ladies...have a drink or two.... some laughs... take care of you, so you can take care of him...
Thank you...yes things definitely looking a lot better now we have a road map. And yes - metaformin 100g. Looking forward to Easter at our beach hideaway.
Itraconazole and hydroxycloroquine...an old azole antifungal with an old RA drug...posted on this here--cancer cells "explode" from overload of waste products... generic drugs..
I'm sorry that that trial was a no-go, but I understand, considering the toxicity of those drugs. There is a lot of investigation of using the PSMA target as a treatment. Most commonly, they attach a radioactive atom like Lu-177 or Ac-225 or I-131 or Th-227 to a PSMA ligand. But they are also investigated attaching other cytotoxic agents like a virus, chemo, anti-androgens, and gold nanoparticles.
Hi... another Aussie here.... was the trial for Lutetium-177? My hubby has mets to pelvis, ribs and spine. He's on XTANDI which is holding for now but I'm always looking ahead..... cheers
NPfisherman knows the proper names of the drugs. See his post. My husband's cancer has spread to numerous lymph nodes in various places and also to ribs and sternum. Guess you'd say it's stage 4. He had a Gleason score of 9 and 18 out of 20 initial biopsies were positive. When his prostrate was removed the tumour had spread to his seminal vessels. About 6 months later he had 33 sessions of radiation. The radiation was delayed because after the operation he had an infection that actually spread to his bones and it was difficult to clear up and he spent some 15 weeks in hospital and rehab.
See NPfisherman's response... he knows what he drugs are. The trial is at St Vincent's in Sydney and I've gleaned some insight to it via another member of this site. You need to have no mets on normal scans but ok to have some show up on PSMA's and your PSA doubling time can't be less than 3 months . There are some other exclusions too like health conditions etc. I think it's quite experimental and not suitable for people that have more aggressive types of pc. The specialist said 'words to the effect' as the drugs are commonly available you could try to replicate the study but with one of the drugs you have to keep increasing the dose until you found the right level....bit complex but he still thought it wasn't right for us. The oncologist we saw yesterday was very concerned that my husband will develop diabetes and have cholesterol problems as he's carrying quite a bit of weight. We'll see an oncologist after we see our prostrate specialist on Friday so after that we'll have a better idea.
Where in Oz do you live?
Oops you’ve been deleted, happened to me .. oh well ,I’ll try not to that again. Salud Hermano..
Thank you Lulu for your kind words and positive messages. Think this last week has been a turning point with hormones finally prescribed. Sort of make it more real.
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